language

Nine years ago when Ruxandra Mateescu’s daughter, Olga, was born with special needs, she was stunned at the lack of information and the gaps in care.

“When Olga was born I tried to look up with Google what retarded means because the doctor said when she grew up she would be retarded or maybe dead or a vegetable. He used words like that,” Mateescu said in a Skype interview.

Mateescu lives in Bucharest, the capital city of Romania and is fluent in both English and Romanian. People with disabilities don’t have many rights in Romania, and much of the public is uninformed about disability issues, “like the fifties in the United States,” she said.

In addition, the Romanian health care system is difficult to navigate, Mateescu said, and she couldn’t figure out where to go to get more information about her child. Even after nine years and many doctors visits, Olga has never had an official diagnosis to classify her disability.

A journalist who worked for a parenting website, Mateescu did what came to her naturally: She started blogging about her daughter, their lives and the struggles she faced trying to find information and support. Other parents responded and asked her to keep writing. She now runs a website that features stories of people with disabilities and their families.

“I started writing when I was very angry, so my writing was very angry on everybody,” she said. “Many of them [other parents] told me that I was courageous… I don’t know.”

Mateescu said it was taboo in her country to even talk about disabilities when she started her blog, but the situation is slowly improving. Now there are more blogs devoted to the subject and mainstream media also has begun to show interest. However, Mateescu calls most of the reporting shallow and says the focus is “on the pity element.” Pejorative language and offensive terms are still common in mainstream news both on television and in newspapers.

“If experienced journalists are doing that, they don’t realize that it is wrong,” she said “Somebody has to say, it’s not okay– this is how you do it.”

One day Mateescu was searching the internet for resources on disability issues and she happened upon the National Center on Disability and Journalism’s style guide, which provides guidance on words and terms related to disability. She thought it would be a great help to journalists and communicators in her country, but there was a problem: The English language guide would have to be translated into Romanian.

She started by sending an email to the center at Arizona State University asking for permission to undertake a translation. “I wrote and I said, ‘Well, they will never answer back they are huge,’ and I received the email one morning, and I was like ‘Wow, they answered.’ We are not used to that reaction of kindness.”

Across the world in Phoenix, Arizona, NCDJ Director Kristin Gilger said she had long hoped to have the guide, which contains almost 100 words and terms, translated into other languages. She immediately said yes.

Mateescu then put out a call on social media for help. Seven volunteers responded — friends, relatives and even an English teacher who happened to be her manicurist’s husband. Together they combed through the guide. Some words didn’t translate or didn’t exist in Romanian. For those, the group did their best to supply the closest Romanian approximation. They worked quickly. It took one week to translate the guide and another to check it and get it ready for publication.

Once completed, Mateescu tried to get the style guide out to as many people as possible by posting it on her website and on social media. She said she immediately starting getting “likes” and “shares.” She is now setting up meetings with journalists and parents to discuss the guide and advocate for its use by Romanian journalists.

Along with improvements in language, Mateescu hopes to see more investigative stories about the lack of support and infrastructure for people with disabilities in her country. According to a report compiled by the Academic Network of European Disability Experts, 24 percent of children with disabilities in Romania are not registered for any form of education. The 24 percent includes Mateescu’s daughter, Olga.

The situation isn’t much better for adults with disabilities. The same report shows that fewer than 16 percent of people with disabilities are employed. It is common for people to stop and stare at people with visible disabilities in public. And Mateescu says it’s almost impossible for people with physical disabilities to get around her home city of Bucharest. Many public buildings, busses and metro stations don’t have elevators or ramps, and most homes are difficult to get into and out of for those using wheelchairs.

Mateescu says it is painful to think about the challenges her daughter will face when she grows up, but she tries to focus on fighting for the things she can change.

“I don’t know if my daughter will have some benefits from that, but, for sure, the next generation of parents will be much better off than my generation is now,” she said.

Wendy Lu from theColumbia Journalism Review interviewed NCDJ Director Kristin Gilger about this site’s advice for covering disability beats. Some top recommendations include being wary of “inspiration porn” and avoiding words that “assume a negative relationship between people and their disabilities (e.g. wheelchair-bound).” Check out more tips from the article by clicking HERE.

Most trained North American journalists try to follow style guides, but when covering the disability community, conflicting terminology sometimes exists.

It is called identity-first versus people-first language.

People-first language, terms such as people with disabilities or woman with cerebral palsy, is the terminology many in North America have heard of. It represents the shift away for outdated terms like “handicapped” or the offensive “retarded.” These older terms were part of disability organization and government agency names. For example, in 1975, the Education for All Handicapped Children Act was passed by Congress to mandate the inclusion of disabled children in public schools. It was renamed the Individuals with Disabilities Education Act (IDEA) in 1990, which is the same year the Americans with Disabilities Act (ADA) was passed. The ADA provides broad civil rights to the disability community and mechanisms to fight discrimination against people with disabilities.

As prominent disability rights legislation that is still in place, the ADA helped promote the change to people-first language. It was a shift in terminology that came from the government and many North American disability organizations.

Although many individuals with disabilities do favor people-first language, a growing number of disabled people, especially from the Deaf community and the autistic community, prefer identity-first language, such as autistic woman.

Syracuse University’s Disability Cultural Center says, “The basic reason behind members of these groups’ dislike for the application of people-first language to themselves is that they consider their disabilities to be inseparable parts of who they are.” They embrace the terms autistic or Deaf or blind or disabled as their identity. (Geography is also part of this debate. In Great Britain, the preferred terminology has always been identity-first, i.e. disabled person. In fact, many in the British Disability Studies academic world and disability activists there say the term people with disabilities doesn’t fit with the social model idea that society’s barriers and negative attitudes are what actually disable people.)

The Autistic Self Advocacy Network (ASAN) in Washington, D.C., explains clearly that most autistic advocates affiliated with ASAN prefer identity-first terminology. Autistic blogger, activist, and law student Lydia Brown said in a 2011 blog post reposted on the ASAN website as a language guide: “In the autism community, many self-advocates and their allies prefer terminology such as ‘Autistic,’ ‘Autistic person,’ or ‘Autistic individual’ because we understand autism as an inherent part of an individual’s identity — the same way one refers to ‘Muslims,’ ‘African-Americans,’ ‘Lesbian/Gay/Bisexual/Transgender/Queer,’ ‘Chinese,’ ‘gifted,’ ‘athletic,’ or ‘Jewish.’”

Brown explains the identity component of the terminology: “When we say ‘Autistic person,’ we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.”

Journalists should not disregard this debate over disability terminology as unimportant. In fact, the reason for this article was a lengthy discussion that broke out on the Teaching Disability Studies Facebook page in 2015 with most posts criticizing NCDJ’s promotion of people-first language in its online style guide.

The Associated Press Style Guide that so many American journalists use does not discuss people-first language, so journalists should look to their sources from the disability community to ask about the preferred terms. This is especially important if interviewing a self-advocate from a specific community, like the Deaf community or the autistic community. But many people with other disabilities are also shifting to identity-first terms.

A woman with cerebral palsy said: “I have cerebral palsy, and I prefer identity-first language. I consider my disability to be an inextricable part of my identity as a human being. It isn’t negative to say I’m disabled; it’s a statement of fact. [My disability] is a huge part of my identity and how I experience the world. To me, person-first language implies a degree of shame or negativity about disability. I embrace my disability because it influences so much of how I see and experience the world.”

“Person first. I may be bipolar, but I would rather people judge me for me, not my illness.” Nicole Mcgarry said in The Mighty article.

Taylor Smith posted: “Identity first. Disability is a part of who I am. It’s helped me grow as a person and brings me together with a community. Also, it’s not my health that disables me — it is society’s unwillingness to accommodate us.”

The one thing that both sides of the terminology discussion agree on is that language about disability is important, so journalists must clearly understand language preferences when reporting on disability issues.

As Lydia Brown reiterates, “The way we use language affects those around us — in our immediate communities and in society at large. Trends of language have the power to transform ideas and attitudes. To dismiss this as ‘a silly semantics argument’ denies the power of language.”

Liebowitz, C. (2015, March 20). I am disabled: On identity-first versus people-first language. The body is not an apology blog. http://thebodyisnotanapology.com/magazine/i-am-disabled-on-identity-first-versus-people-first-language/

NCDJ is publishing this list in conjunction with an updated style guide intended for journalists and members of the general public who are seeking the appropriate and accurate language to use when writing or talking about people living with disabilities.

What is considered acceptable language regarding disabilities has changed dramatically over time, and standards continue to adapt as understanding and perceptions evolve. Many of the terms below were once widely used and were not always considered offensive, but now are widely considered to imply inferiority or have other negative connotations. Others are outdated medical or colloquial term

Afflicted with: Implies that a person with a disability is suffering or has a reduced quality of life. See entry on afflicted.

Able-bodied: Refers to a person who does not have a disability. The term implies that all people with disabilities lack “able bodies” or the ability to use their bodies well. See able-bodied entry.

Confined to a wheelchair: Describes a person only in relationship to a piece of equipment designed to liberate rather than confine. See wheelchair entry.

Crazy, insane, nuts, psycho: All are considered offensive and should not be used except in direct quotes. See mental health.

Deaf and dumb/deaf-mute: Avoid these terms as they are often used inaccurately and can be offensive. See deaf and dumb/deaf-mute entry.

Defect, birth defect, defective: Avoid these terms when describing a disability because they imply the person is somehow incomplete or sub-par. See entry on congenital disability.

Demented, senile: Avoid describing someone as being demented or senile. Use people-first language when describing someone with dementia, such as “a person with dementia.” See entry on dementia/senility.

Epileptic fit: The term seizure is preferred when referring to the brief manifestation of symptoms common among those with epilepsy. Avoid stating that the person had a fit or an epileptic fit. See entry on epilepsy/epileptic fit.

Loony, loony bin, lunatic: All are considered offensive and should not be used except in direct quotes. See mental health entry.

Schizophrenic: Use people-first language, stating that someone is “a person with schizophrenia” or “a person diagnosed with schizophrenia” rather than a schizophrenic or a schizophrenic person. See entry on Schizophrenia/schizophrenic.

Spastic or a spaz. It is acceptable to refer to someone as having spastic cerebral palsy, but it is derogatory to refer to someone as spastic or a spaz. See entry on cerebral palsy.

Stricken with, suffers from, victim of: These terms carry the assumption that a person with a disability is suffering or has a reduced quality of life. See entry on afflicted with.

Vegetable: Use people-first language, such as “a person in a vegetative state.” Avoid referring to someone as a vegetable or “veg” as such words dehumanize the person. See entry on vegetative state/comatose/non-responsive.

Reporting on disability can be akin to walking through a minefield, carefully avoiding certain terms but inadvertently using others that backfire. As part of a running segment on special education, NPR’s Steve Drummond spoke with NCDJ director Kristin Gilger about how journalists should refer to students with disabilities and to the disabilities themselves. Gilger referenced the NCDJ’s style guide, which gives recommendations but also admits that there’s little uniform terminology when referencing people with disabilities. Gilger said, “our advice to journalists it to ask the person you’re interviewing.”

The NCDJ style guide is currently undergoing an update. We hope to have it up by the end of this year. Read more.

About NCDJ

People with disabilities make up at least 19 percent of the U.S. population or 54.4 million people. The goal of the NCDJ is to provide support and guidance for journalists as they cover people with disabilities.